12 Dec Interview with “Stop CAID Now” Founder Lisa Moreno-Dickinson
I recently was made aware of an amazing woman that has been working very hard to achieve her goals and to share her love and passion. She is on the rise and is doing amazing things with her life. In this interview you will learn of a woman that is very dedicated to achieving her goals and to helping others. I strongly feel we can all learn from her words and be inspired. May I introduce to you, Lisa Moreno-Dickinson.
1. SalonGuy: Lisa, what have you been working on over the last 5 years and how have you grown?
In 2009, I delivered my son Brody on Feb 28th, which ironically happens to be National Rare Disease Day. My other boy, Aidan is now six years old. I have been a stay-at-home mom for both of my sons. In addition to this I have been able to do some work outside my home, mostly volunteering to serve and provide for the homeless, working at shelters and being an advocate for anyone who needed it. I was a National Out Reach Director for a child sexual abuse organization where my primary role was speaking to children, from ages 3 to 20, about respecting themselves, their bodies and teaching them they can be anything that they WILL themselves to be.
Brody’s “story” began when he was just three months old. I started noticing symptoms that were not “normal”. I however, wasn’t too concerned because I knew his older brother could have brought viruses home from school. Since I had been a director and teacher at a school with children 6 weeks old to 12yrs of age, I was able to detect most of the normal viruses. This said, Brody’s symptoms persisted to a level that not only showed external signs like extreme redness to his skin (like severe sunburn) and swelling (which we later learned was due to the inflammation he was having internally), he was in extreme pain. He not only couldn’t tolerate his clothes touching him, but every day he also expressed the internal pain by crying and screaming. I remember the frustration of his not being able to tell me where the pains were stemming from.
As he grew older, he was able to identify his pains with “boo boo” (which were, sadly, his first words), but it was just as hard because I was still unable to give him the help he needed. He would grab band-aids and put them all over his body thinking that would take away the pain. It was at 6 month old that most of Brody’s invasive testing began. For 19 months he endured so many tests, operations and scans that showed a disease, but not one that many doctors understood or could specify. It wasn’t until his first endoscopy done at CHOPs (by one of the best doctors), that they found his granuloma. Knowing these granulomas were abnormal lead to multiple laparoscopies, which showed many more granulomas throughout his body. Later, when his appendix was removed, they also identified granulomas inside it.
We also had the Armed Forces Institute of Pathology (AFIP) look at his biopsies and they confirmed that the granulomas were noncaseating. The AFIP also found silica in the lymph nodes/granulomas. After confirming that these were true granulomas and noncaseating ones, which ruled out a lot of infectious diseases, we went to the National Institute of Health (NIH). The NIH located the specific gene mutation for his now known disease – Blau Syndrome. We now understand that the presence of silica activated by intense inflammation causes certain cancers. This said, Brody, as well as having Blau syndrome and an overlap of Children’s Auto-Inflammatory Disease (CAID), is also prone to lymphoma. The labs tests, genetic testing, symptoms and clinical work-up all helped with this diagnosis later confirmed by the Cleveland Clinic.
During the time before having a confirmed diagnosis, I held Brody in front of two nurses and three Doctors; one of them mentioned “it was the worst pain they have ever seen a baby in”. It was at this moment that I became an advocate for, as well as, a mom for, my child. For the 19 months before his diagnosis I had been literally, Brody’s only “treatment’ by carrying him close to me. This was all I could give him, so I continually carried him as much as I could. Thankfully Aidan was in pre-school during this time, which allowed me to give Brody extra time during the day. But I was sure to give Aidan the attention he needed when he was home. I had vowed that no matter what, Aidan was never going to have a school project that he needed me to attend or play and look around and not see me. As difficult as it was, I made good on my promise to him..
The only time Brody slept was after surgery or a procedure because he was completely under the comfort of a pain-killing drug or medicine. I remember sleeping in the hospital cribs with him to comfort him as best I could, but always knowing it wasn’t enough.
I have observed some horrific moments with Brody and literally have had to take my emotions to another level in order to stay focused. One of the worst memories I have was when I had to hold a gas mask over his face for 15 minutes during one of his procedures. The functioning of his lungs were in question and he was allergic to one of the lighter sedatives, so the only way to have him lay still for 15 minutes was to have the mask over his face. As if in slow motion, I watched tears come out of his eyes and his body to fight it. If you have ever been under anesthesia and tried to fight it, you know what a horrible feeling it is. Well, knowing what he was feeling and seeing his tears……I said to myself “if I don’t have a nervous breakdown now, I never will”. This test was about eight months ago and it is still vivid in my mind.
I had thought that with Brody’s finally being accurately diagnosed, that this marked the end of a long and heart-breaking trial. I was wrong; it was just the beginning! Prior to my older son being born, I had worked for the Police Department. I had loved it and had been looking to get back in the field. I was going to go into forensic psychology, which is a field in which I was very interested. However, I remember looking at Brody and realizing: “what am I thinking, my baby has a genetic, rare disease, without a prognosis, hardly understood by many physicians, no foundation for it and he is taking more than an adult dose of injections daily”. I knew at that point what needed to be done, so I held Brody and made him a promise.
I told him that no matter what illness he has, I was going to make sure he was going to have all the opportunities to have the best life possible. The only way I knew how to do that was to allow him to live, while I fought for his life. Knowing my determination for Brody, I wanted to also help all children suffering with Childhood Auto-Inflammatory Diseases, so I coined the term “CAID” and started StopCAIDnow.org.
2. SalonGuy: What is “Stop CAID Now” and why choose this disease to create a charity to fight it?
StopCAIDnow.org is a 501c3 non-profit organization focused on all aspects of making a difference with respect to this terrible group of diseases. We are the voice for the children afflicted, their families and the doctors dedicated to fighting CAID. I choose these diseases because the need to understand the inflammatory response – the innate immune system and the damage it creates – is essential to the outcome of the lives of these children. The pain they endure is horrific. The diseases of CAID range from some who don’t make it past infancy, to others who live with the chronic illness, to others bound to a wheelchair, to others who don’t know their prognosis. None of these situations are good enough for me! In the video titled “CAID is not just one disease,” which can be viewed on our website: www.StopCAIDnow.org, shows all the diseases we cover.
We have created and implemented several initiatives to raise the public’s awareness of CAID, to inspire and enable physicians to specialize in this area, and to honor the strength and suffering of those innocent children who have faced and persevered so bravely against this cruel disease. Among them are:
- The “True Hero” awards which we give to the children
- The CME (Continued Medical Education) called CAIDology, accredited by the Cleveland Clinic (I actually met with the CME board while Brody was getting one of his Pet Scans, to see how to get the CME started).
- The storybook: “Hero In Me”
- A golf tournament
- Partnerships with hospitals
- Gaining global recognition as led globally as StopCAIDnowInternational
- Inducing the PepsiCo, NFL, the Flyers, the Eagles, ARCA, INDY, and NASCAR to become involved
- All these efforts are helping to make a difference for CAID.
3. SalonGuy: What drives you to keep moving forward and what advice can you share with others that may need better direction or motivation?
My promise to Brody and all the afflicted children and their families keeps me driven. The motivation is simple and has always been, to within, never lose focus on anything I put my whole heart and mind to. My advice to others is to not waste time; if you have a vision then use it and put it into action. Thoughts are just that and not effective until brought into play. When others have said “it can’t be done,” I say: “really, show me why and I will show you how it can be.”
I think the one thing I see amongst foundations which is mind blowing is competition, which I neither understand nor tolerate. If you focus on what others are doing, you need to question what your purpose is. I don’t care what others DO, I know what I need to do for the children and I stay focused on that. I welcome other foundations and try to help them, and there are many that I am in contact with. I also sit on the board of the Global Genes Project and support all Rare and Genetic Diseases. I am also writing blogs for Parent Society about a variety of diseases and about those who give back.
4. SalonGuy: Being my main industry is beauty, do you have anything in the works that may appeal to that audience?
I do and it is very exciting. I call it “La Fin Du CAID” and I am sharing this launch LIVE in January and will definitely share it with your audience. All who have received an invite to the Gala have been given a sneak peak. We are the first Foundation to create such a product. I developed this with a few things in mind. I understand the Foundation is near and dear to me but it doesn’t mean others are going to be as receptive. It is hard for others to accept children’s illnesses…and I wanted to give those who wanted to help something lovely that at the same time benefits the children and the Foundation. 100% of the proceeds will go towards research. I didn’t want to spend my money on “things” that I knew people wouldn’t want, I also know that when this is attached to a business card that it will provide both awareness and possible funding for research. This is why I created “La Fin Du CAID” and all who know what it is have said “it is off the charts”!!! I will explain this more in depth when I talk LIVE in January.
5. SalonGuy: What other projects or events are you working on currently?
- We are holding the “Ultra Sleek and Chic White Carpet Gala” on February 25, 2012 at the Ritz Carlton in Philadelphia. It is way outside the box and full of entertainment. This will be an EVENT to remember. My incredible host, Chance Spiessbach, and I have planned so much from the top known comedians to a live fashion show by the best designers, special appearances, live band, live auction, and, . . . my surprise launch’s…
- We have partnered with both the Cleveland Clinic and the Children’s Hospital of Philadelphia and have educational and research projects planned.
- We have another big project in the works that shows we are keeping up with the NOW. This is also very exciting and I am grateful to have my International Advisor helping make this happen.
- We are starting a “TrueHopeFund” for CAID, that will help those needing financial support with treatments, traveling and insurance.
- We are planning an exciting event in the near future called “Tackle CAID” and it will be a HOT one. I am inviting all Foundations to benefit from this EVENT since we are hoping to have it at one of the biggest venues. Hint: over40females vs under 40 ….
- My 5 year plan is to have a wing at one of the top hospitals dedicated to CAID
6. SalonGuy: You have some big names on board with your charity. How did you get them to be involved?
Well, when I asked them I explained that it is not what you have done that makes me want to have you on board, it is more about who you are inside. I asked everyone to please go to the site and learn about StopCAIDnow. If after learning about CAID they still wanted to support us, then we want them on board. Anyone can read a script, but I want those involved to truly care. I have children who look up to these “celebrities” and I won’t let them down. I have been very fortunate that the ones involved have such heart and truly get it!! They also can handle how outside-the-box I am in order to make a difference and are fully on board with the future of CAID. I want those on board to be proud of who they are supporting, I may have done a lot in these 11 months but it is with the support of others that I am able to deliver TRUE HOPE!! ~ I appreciate all involved in helping StopCAIDnow. I have an impressive medical board, advisory board (which my husband is on), an International Advisor and an Advocate who have been such assets to the Foundation. Among them are:
- CAID’s Ambassador, Kamie Crawford (Miss Teen USA 2010), who has great energy and ideas to help bring more awareness, has been great.
- Forge Media which has expertly assisted in all my web and design details
- Our host Chance Spiessbach, has truly been so helpful and promotes StopCAIDnow wherever he goes
- Lisa Ling, who is truly a beautiful person inside and out. Her support means a lot for many reasons and you will hear more from her soon.
- My spokesperson Mike Quick, is known for his amazing talents on the football field; but as grand as his reputation is for being the 5-time Pro Bowl winner for the Philadelphia Eagles, this is just a small part of who he is inside. I am honored to have his support and devotion to the children. He knows what it is to have a vision and make it happen. We have a lot of great things ahead for 2012, so look out!!
7. SalonGuy: What makes you love what you do?
Knowing that I can accomplish these goals and that these children will have a future and their children will have a better one. The children send me pictures and videos of them with the awards I give them, and seeing their smile and knowing they have my word is most important to me. The parents have a lot to handle and I am committed to them. They have become a part of my family. I never want a family to go through what I went through with Brody, which is why The CME is Key!! I am on the phone with parents sometimes at 2am – I don’t have a punch in time – and they can get to me anytime by phone, Facebook, email or by texting.
Giving Brody his daily shots is the worst and best 5 to 20 minutes of my day. But both my boys know I will do anything for them, and now the families of CAID, and Rare and Genetic Diseases, know I am there for them as well. Long term inflammation causes cancer, so I work with cancer foundations too…..What makes me love what I am doing? Is being able to think outside-the-box in order to achieve our mission for children, who need serious help.
8. SalonGuy: How can people support your charity?
They can visit our website at www.stopcaidnow.org and learn more about the diseases and the Foundation. They can also donate by clicking “donate now,” or support us by purchasing a shirt, ribbon or the storybook. If they would like an invite to the Gala they need to email me at firstname.lastname@example.org, including their name and address.
Stephen, thank you for letting me share Brody’s story and information regarding CAID and the Foundation. It is people like you, who give Foundations a voice, and help make a difference. I appreciate your support and all you do for others. All is Possible, because together we can make it possible!!